Becoming a Self-Advocate
James Ball, EdD, BCBA-D
Autism Asperger’s Digest September/October 2013
When I think of the term self-advocate, I am reminded of the Autism Society of America’s (ASA) national conference. Before the actual conference starts, the ASA puts on a full-day presentation on how to be a self-advocate for people on the spectrum. The first year the ASA did this special presentation, I remember listening to StephenShore (an author, college professor, and person on the spectrum) addressing a crowd of over 50 young people on the spectrum. His dynamic talk was insightful for those who wanted to learn how to advocate for themselves. This unique session has been a mainstay of the ASA conference ever since, featuring exciting speakers—all of whom are individuals on the spectrum—who share their insights on how individuals can be their own best advocates. In this article, I will highlight aspects of self-advocacy that these experienced individuals find rewarding and challenging.
Disclosure: A Special Note to Parents
Perhaps the most important aspect of self-advocacy is the concept of disclosure. It is critical that the child knows that he is diagnosed with autism spectrum disorder (ASD). I am often asked, “When should I tell my child?” I always go by two rules: Did the child bring up the topic? Did he ask questions about being “different” or not understanding why he does what he does? If you answered yes to either question, then this is the time to discuss the diagnosis of ASD with him. You should highlight the strengths of ASD that your child exhibits (e.g., memory skills, strong knowledge base of a particular topic) while discussing some of the challenges he might have (e.g., sensory sensitivities, social issues). Revisit this chat often to evaluate if your child has really understood the concept.
What Does Self-Advocacy Mean to Me?
For most of us, self-advocacy means the ability to ask for what we need, based on where our challenges lie. These could be in school, at the workplace, or in a social situation. For example, if I am at work and need a quieter location to be more productive, I need to talk to someone about it. However, it is not always easy for individuals with ASD to ask for what they need.
How Can I Advocate for Myself?
When you design your self-advocacy plan, be as concrete as possible when you answer each of the following questions, adapted from the Wisconsin Department of Public Instruction Handbook, p. 17 (WDPI 2012). This will allow for immediate strategies that will help you deal with the issue you are attempting to advocate for. (See “How Self-Advocacy Works” sidebar.)
Step 1: Decide. What is the decision I need to make? What decisions could I make? Who can help me make this decision? Is this a situation that needs someone else’s attention, or can you address it on your own? You must decide who can help you achieve the desired goal and ask for this help.
Step 2: Evaluate. What are the pluses and minuses of each choice? What can I live with and what is non-negotiable? (Keep in mind that not everything is non-negotiable!) Write the appropriate choices that need to be made. Select the best choice. Describe why you think that choice is best for you.
Step 3: Reflect. Did I make the best choice for myself? Did I achieve the desired outcome? If your self-advocacy plan was successful, determine why it was and what skills you used to get it. Keep these in mind for the future. If you were not successful, ask yourself what you could have done differently. Use what you learned in future self-advocacy experiences.
How Self-Advocacy Works
Situation: I need a quieter place at work to be more productive.
Step 1: Decide
>Decision I need to make: What can I do to get a quieter work space?
>Decisions I could make: Inform my supervisor about the issue, ignore the issue, or talk to my parents about it.
Step 2: Evaluate
>Pluses and minuses of each choice: My supervisor is really the person who can make the change, so it would be good to talk to her. Ignoring the issue for now might seem easier, but in the long run it won’t solve anything. Talking to my parents could be helpful as they might suggest how to talk to my supervisor about the issue.
>Select the best choice: I’ll talk to my supervisor about the need for a quieter place to work.
Step 3: Reflect
>I spoke to my supervisor, and she allowed me to move to a cubicle on the other side of the building that is less noisy.
>My self-advocacy plan worked! I achieved my goal because I figured out what I needed to ask for to be successful. I approached a person who could help me make the appropriate change.
Wisconsin Department of Public Instruction (WDPI). “Opening Doors to Postsecondary Education and Training: Planning for Life After High School.” 2012. http://sped.dpi.wi.gov/files/sped/pdf/tranopndrs.pdf
James Ball, EdD, BCBA-D, has been working in the field of autism for 20+ years helping children, teens, and adults with ASD. Learn more about Jim’s services on his website.
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